Sunday, October 31, 2010

The boys went easy on me this year as far as costumes go. Max wanted to be an Army man in hopes I would buy him a gun(not happening dude). Ollie wanted to be Harry Potter again in hopes of getting his his cousin, Nathan's real looking Potter wand(that happened.) Harper just wanted to wear the outfit he wears pretty much every day, courtesy of Heather & Pierre. So it was nice and easy. And yes Davy did dress up, and it was homemade(thanks mom). But I'm saving it for her 7 month post which is way overdue(we've been busy.) We did our treatin last night, but if you are going tonight, have a fun, safe Halloween.

*Interesting fact....did you know that more kids get hit by cars then poisoned by candy on Halloween. So for pete's sakes look both ways.

Saturday, October 30, 2010

I have never seen this much determination in a baby.Davy is supposed to be wearing these arm bands(no-nos) to protect her from disturbing Dr. J's handy work. As soon as we put them on....she takes them off. I tried just about everything, except maybe super glue.

Lucky for us, there is an awesome family that goes to our church, who also had a daughter with a clefty. They told us about some other arm bands that are way better. Not only did they order us a pair but they came over and showed us how to use them too. So we are saying C-YA to the no-nos. Her new arm bands stay on so much better. Thank you guys!

Friday, October 29, 2010

Tuesday, October 26, 2010

OK it's confession time.I am one of those girls that bought baby clothes before she had kids. Go ahead and make fun, Scott always did. If I saw something I loved and on sale, I would buy it. Call it a hobby, issue or as I would say "planning ahead". After I had my third boy, I came to the realization that I was never having a girl. So I got rid of my stash. All except one, this little red dress. I couldn't do it, I loved it too much. I have literally saved it for like 9 years. I told myself I would get rid of it after baby#4. Have to say, totally glad I held on to it. It actually makes me feel happy inside when she wears it. And now you get to make fun of me again. Awww c'mon, how cute is clefty in a red bonnet.In case your wondering, I got it from baby gap.

Monday, October 25, 2010

1 days after surgery 2 days after surgery 3 days after4days after surgery......we got a couple of smiles today

5 days after surgery

Stitches are off!It couldn't have went smoother. With Davy's Adrenal issues, being put under anesthesia is a little more complicating. They have to give a "stress dose"of steriods at least a half an hour before, that is why they try to get that IV in before. They have to give her another one 6 hours later. Without it she would not survive. Then her nostrils were pretty impacted with , let's just say"stuff", that needed to be flushed out and the anesthesia Doc thought that it would be best to intubate her so she wouldn't choke on it. So the suture removal becomes an all day event. But we lucked out. Dr. J told our Endocrine and "Ani"Doc that he could to it fairly fast and it would not require intubation or her stress dose. Well she still requires a stress dose no matter what, but not as large of a dose, so not through an IV. Am I making any sense to you? Basically what could have been an ordeal of 6 hours was cut into 3.....booya. Dr.J saw how fussy Davy was being and said it indeed was not normal. He's pretty sure she has some sort of infection, so she is on another round of antibiotics and he gave us more codeine. She also will be wearing tape for the next week to help her not disturb her lip. SO hopefully things we be on the up and up. In the meantime we will be walking and retrying to get these stupid no-no arm bands to work. I think I need to MacGyver them on her some how. Ducktape......sock....safety pin?

Sunday, October 24, 2010

To say this week has been hard is an understatement.Instead of Davy getting progressively better each day, I would say she got progressively worse. By Friday we only had one dose left of Davy's Tylenol with codeine and I started stressing. So I called Dr. J and told him what was going on. He advised me to try using ibuprofen with regular Tylenol first and if it wasn't enough then to call him. He also told me that he was not surprised by her still being in a lot of pain, because her surgery was not your average clefty repair. Poor Davy, she was just miserable. There were only two things we could do to distract her. One was taking her for a walk. I have walked her all over town....twice. And when I couldn't walk anymore, Scott did. Then we walked together, until finally Davy decided she no longer was distracted. It felt like I walked a marathon on saturday.

The other thing that would distract Davy was, funny enough, Yo gabba. We could get a good ten minutes of no crying from it. And when your baby is crying all day ten minutes is a gift. I told Scott that he needed to pat himself on the back for a job well done. Then I sent a message to Lance telling him he was an angel straight from heaven for making Davy happy today.

Tomorrow morning we are going back to Choc to have Davy's sutures removed. It's pretty much a mini surgery. So tonight we start the process all over again. No milk past 2am, wake up at 5am, fill out paper work, watch the nurses try to put an Iv in and have her be put under anesthesia. But this time I think I will be able to sleep in the waiting room, cuz man.........I'm exhausted.

Thursday, October 21, 2010

Before I tell you the details, I first have to tell you that I ended up accidentally deleting half the pictures I took at the hospital. So so sad. Luckily Scott was taking Iphone pictures. The second is, some of these pics have blood so if you get squeamish......close your eyes.It was one of those nights of sleep where you wake up every hour.I wake Scott up at 5am and say, are you ready for this? We pack up our little Davy and she is all smiles and I think, are you ready for this little one? We get to Choc and it's business as usual. Papers, questions and us making sure they are giving her the correct meds for adrenal insufficiency. It takes 3 nurses and one anesthesiologist to NOT put in Davy's IV. Then they decide that they will try again after they put her "under." Hmm, good idea guys, wish you thought of it earlier. Dr. J comes in and asks us if we have any final questions. I say, just take care of our baby girl.We say our goodbyes and I lose it. Like the fall in my husbands arms and hyperventilate cry kinda lose it. They start wheeling her away and I remember her blessing(for any non-mormons, it's kinda like a special prayer) from the night before, there will be guardian angels all around her.......The doctors hand will be guided......she will completely recover.....and then i feel comforted. So now what? How do I pass the next three hours? I thought I would read or sleep or watch the view(not by choice). But it's kinda hard to do anything, but think of how your little girl is currently being reconstructed. Those were the loooongest hours of my life.Almost exactly 3 hours later, Dr. J walks in and tells us that things went as good as they possibly could have. He was very happy with the results. He then tells us how Davy woke up at the very tail end of surgery.....uhhhh whaaaaat?!!! I'm glad you didn't start off with this Dude. He said she was completely numb, but that she did wake up and wasn't to happy. I am trying to think of anyone that would wake up happy during a surgery being done on their face. We then walk/run into the recovery room and she is asleep and so peaceful. Now, the first time that I looked at Davy I was expecting shock or this, she looks so differentfeeling. But I felt quite the opposite. I knew this face. This was myDavy. I felt so calm and comforted........and then she woke up.Remember that Mama bear suit I was supposed to be wearing? Well, as soon as Davy woke up and was shaking with pain, I quickly took it off and handed it over to Scott. I had the hardest time. She was hurting so much and had blood coming out of her nose and mouth, I am ashamed to admit I froze. But not Scott, he stepped up big time. He had her swaddled and in his arms, while I told the nurses to giddy up and get some pain meds. If you are ever in an intense situation, I highly recommend finding a Scott. He is very comforting.

After surgery Davy was supposed to wear nose stints for the next 2 weeks, to help with the shape of her nose. They lasted like 4 hours. She was able to push those bad boys out with just her face muscles. The nurses put them(painfully) back in twice and then Dr. J said it wasn't worth it. She could end up doing more damage then good. Davy also needs to wear these arm bands(no-nos) so she won't disturb her stitches. The girl is Houdini though, she can get out of them in 2 minutes. I have to watch her like a hawk.

The first night in the hospital was exactly how you think it would be, not fun. Are main goal was to keep her as pain free as possible. We tried to take shifts. I slept from 12-2:00 and then 4-7. Then 7:30am, Dr. J came in to take a looksie. I tell him that he did a great job and it looked better then I could have ever imagined. He tells us how it turned out better then he imagined in the nightmares he was having. That's right, Davy's surgery gave him nightmares. I am just glad he waited until way after the surgery to tell us this. And yet oddly, I appreciated his honesty. Twenty four hours after surgery we are leaving Choc to go home. It's nice to be home. Davy has had been in some intense pain, to where even her toes are shaking. It's hard to see her suffer like this. But she has also been mellow and even smiled her cute new sideways grin.I just feel so VERY grateful right now. So once again, thank you everyone for your kindness, comments, babysitting, fruit baskets, dinners, breast milk, packages, phone calls and prayers.

Wednesday, October 20, 2010

Just quick blog to thank you for all the kind messages. I read all of them while waiting for Davy. They were a great source of comfort. She had prayers coming in from all around the world and everyone of them has been answered. She is home and doing well and I am doing well. I will post way too many pictures, along with a detailed story very soon.

Monday, October 18, 2010

We had a talk with our boys about how Davy was having a surgery to repair her lip and nose tomorrow. Max seemed sad and wanted us to wake him in the morning to so he could say good bye. And Ollie was saying how he was gonna miss her big smile, " Mom she has the bestest smile out of all of us, I'm gonna miss it. " It was a rough couple of days. I let my emotions get the best of me. But now It's game time and I'm putting on my momma bear suit. I am not messing around now DR. J, so watch out. No, but seriously Dr. J, I know you said that this was the largest unilateral cleft you have ever dealt with, so please, please take extra care of my big clefty. Take your time in there, no rush OK. I can't imagine this face getting much cuter though? Good bye my clefty.

Surgery is Tomorrow at 8:30 am. Please pray for her. And calling all guardian angels, she/we need you to be with her every step of the way. Please comfort her and if you got time I could use some comfort too.

Tuesday, October 12, 2010

For the past couple of months we have been trying to schedule Davy's first lip & nose surgery. Apparently her surgeon is one busy dude, cuz the first date he had available was December 21. That's right, 4 daysbefore Christmas. Even worse then that, it was scheduled for 3:30 in the afternoon, which means I would have to starve Davy all day(she has to fast 8 hours). Brutal huh. I was sad that it would be ruining Christmas for the family, but happy that my boys would have no school and could be shipped off to their cousins house. I pleaded with the nurse that if there were any cancellations any time sooner to give us a call. So guess what? I got a call last night. Davy is now having her surgery October 19th, one week from today. It will be at 8:30 in the morning , so no all day starvation. This is very sudden, but I know it will be so much better to do it now rather then Christmas time.I have to admit, I cried really hard after I got off the phone. I am not excited, I'm nervous and scared. It's weird to think of her looking any other way. I love her big clefty smile. She won't be the same Davy and it makes me sad. Dang it.....I'm crying again.

Monday, October 11, 2010

Life has been cuh-razy!In the past 2 1/2 weeks, Davy has been to 9 Doctors appointments! 9! I thought I was going to have a mental breakdown. Instead my body broke down. On Thursday I was getting Harper's car seat out and BAM.....my back went out. I couldn't move. Great one more Doctors appointment, just what I needed. I was ordered by Dr. S to have 3 days of bed rest, except replace my bed with blanket on the hard floor. I have to say the hard surfaced helped my back, but not so good for the rest of my body. As much as I was suffering, Sir Scott had it way worse. He had to take care of Davy and me, poor guy. After a couple of days on the floor, Ollie confessed to me that he knew the reason why I broke my back. "Mom, I have been stepping on a lot of cracks.....A LOT of cracks."

Tuesday, October 5, 2010

This is Harper and "Daby" throwing their gang signs.Actually Davy is obsessed with her hands right now. She stares at them for hours. I think Harper was wondering what all the fuss was about and joined in on the action. I am amazed at how gentle he is with her. For those of you who know my Harper, know that gentleness is not his strong suit. But with her he is a different kid. Maybe he can sense how special she is. Or maybe he just knows mommy will freak out big time if he does something naughty to her.

Friday, October 1, 2010

Every day at 2:30 I have a play date with my homey, Jill. It lasts all of 10 minutes, if we're lucky. She shows up looking like the beautiful well dressed woman that she is....and I walk out of my house looking like a hillbilly/hobo. As my kids pile out of her sweet minivan(I'm jealous for real), we try to cram in as much fun as we can before June(her daughter) tells us it's time for Jill to go home. Jill will blast her new favorite CD(the new apples in stereo), and I'll dance in my driveway for her. Then we talk about how fun it would be to have a girls night one day....one day soon. But for now I will just have to be content with a dance party in my driveway.

Davy's medical History

I am "the mom" to 3 boys and a little girl. Through taking a microarray test, we found out that my Davy girl has a rare chromosome deletion. I have written this out in hopes to find others who have any similiar conditions.

Davy has a microdeletion of 1p31.1-1p31.3. She has panhypopituitarism, a cleft lip and palate, Congenital heart defects(asd, vsd, pda and had a CoArc). She had a surgery for malrotation of the intestines, and a g-tube put in to feed her. She has GERD with esophagitis dysphagia. She is on multiple medictions that need to be given round the clock. Three of those she will need for the rest of her life. To read about her journey start here.